Doctors call them heart sounds. The sounds they hear as blood flows through the heart, as valves open and close.
There are some other heart sounds, in my own heart. They are the sounds, the lives of those born with bicuspid aortic valves. Others have another kind of aortic disease in their chests. They also have entrusted their life stories to me. Too precious to be lost or ignored, I share their heart sounds with you here.

Sunday, October 5, 2014

A Cardiology Referral

Spirit of Dana Point sailing off the southern California coast
"Life without love is like a ship without sails" - Yogi Tea

If you started reading at the beginning,

you know that what seemingly was just a flu bug

ended up with my husband in the hospital, a very sick man.

In time we learned his problems stemmed from his aortic valve in his heart.

Now, the internist was referring us to a cardiologist.

Time for Aortic Valve Replacement

True to what he said when we first met him, the internist ordered that first echo while my husband was in the hospital. He knew it was important to understand my husband's heart murmur. (If it sounded terrible to my ear on his chest, I am sure it must have sent volumes of rather shocking information through a stethoscope into a physician's ear.)

Now the pneumonia was cleared, but my husband was in congestive heart failure. I promise to tell you what that was like for him, what it can do to a man in his prime, a little later.

Knowing from the echo that his aortic valve was severely narrowed and calcified, and his left ventricle (the main pumping chamber of the heart) was in trouble, the internist was the first one to tell us that my husband would need his aortic valve replaced. I did know that heart valves could be replaced. My frame of reference was a data point of one, our dear family friend, whose mitral valve had been replaced with a pig's valve.

It was not hard to accept the idea of needing surgery. My husband definitely had symptoms now! The internist said he would refer us to a cardiologist affiliated with a local hospital where open heart surgery was performed.

Never Ask a Surgeon if You Need Surgery?!

One thing the internist said to us then left a deeply lasting impression. It also is very telling regarding how the practice of medicine and surgery evolved once open heart surgery became possible.

We innocently asked why we needed to see a cardiologist. Why wouldn't we go directly to see the surgeon? I will never forget his answer, "Oh, you never ask a surgeon if you need surgery!" It conjured up images of knife wielding doctors in white coats, lurking near operating room doors, luring their innocent victims swiftly inside where they would soon be helplessly unconscious. Our vivid imaginations created those nightmarish scenes, of course. But his meaning was clear. Surgeons like to do surgery and are not to be trusted!

It is a bias that has apparently developed over time between medicine and surgery. The medical branch should be the "gatekeepers" of patients.

Years later, when my husband's aneurysm was discovered, we went on our own to see a surgeon. The office was inside a hospital, right on the floor where surgery was done. So many years later, those words still haunted us. We were doing what we had been told was at best very unwise. We were going directly to see a surgeon. Time has proven that for us, in that situation, it was the best thing we could possibly have done!

What Would the Cardiologist Be Like?

We had only met one cardiologist prior to this, while living on the east coast. He was a wonderful, caring, compassionate man, who took beautiful care of my mother. Mom had just come to visit us when she was stricken one Saturday morning. The ambulance took her to our local hospital, and this man was in the hospital when they arrived. It is still not clear to me what exactly precipitated her crisis. She was on several medications, including a beta blocker. On the monitor in ICU, I remember how slow her heart was, how widely spaced the signals on the monitor. This kind physician accepted my mother as his patient from the moment he met her. He changed all her medications, and eventually discharged her with follow up care. It was many months before she was well enough to travel home, and I have always been grateful to him for saving and extending her life.

If we had not moved, I am sure when my husband's valve failed we would have turned to him. It never occurred to us to consult him about his heart murmur in those days. After all, he had lived with it since childhood and felt very well.

With that background, we went to see the cardiologist recommended. I don't remember very clearly the nurse or office staff during that visit. An ekg and blood pressure reading were likely done. They had the report from the echo, so already a great deal was known. And by now, my husband looked as sick as he truly was.

Indelible Memories

There are some indelible memories from that office visit. We sat in chairs side by side, across the desk from the cardiologist. I remember it being quite a nice office. There were framed diplomas on the wall. But this man was nothing like my mother's cardiologist. In fairness, this was a practice supporting an apparently busy cardiac program that included open heart surgery. His pager went off, and I remember him speaking briefly on the phone, apparently about an urgent situation.

Born with a Bicuspid Aortic Valve?

The first indelible memory we have is when he told us that my husband had been born with something called a "bicuspid aortic valve". We had never heard of such a thing. Despite my husband's childhood hospitalization, he was sure that his aortic valve was bicuspid. One of the reasons he gave was that BAVs fail at earlier ages. My husband was too young. I tucked those three words, bicuspid aortic valve, away in my own heart, to ponder over later. Had my husband really been born with such an exotic thing? I was inclined not to believe it.

Fixed for Life!

I recognize now that the doctor ran through the typical information about aortic valve stenosis with us. He spoke about replacement options, and said that mechanical valves were used in younger people, as tissue valves would not last very long. The exception was in the case of young women who wanted to have children. They could not take an anticoagulant. Mechanical valves required taking an anticoagulant, coumadin, to prevent blood clots from forming. Mechanical valves lasted essentially forever. So it would be a mechanical valve and coumadin.

He would be fixed for life!

My husband and I remember different things about that office visit. One thing we both remember. It was when the doctor was talking about the survival statistics for people with aortic stenosis. He said that without surgery, my husband would "terminate" in 18 - 24 months. And then he looked at me and said, "You don't look very happy."

My husband was in heart failure. We knew surgery was his only hope. To this day, I do not believe that he would have survived any length of time at all without intervention, certainly not as long as those general statistics. Of course, I was not happy. He was talking about the love of my life.

My husband would need an angiogram before surgery. The cardiologist would get in touch with the surgeon. And so we went home.

Checking Back with the Internist

Our internist was a very kind, calm man, easy to talk to, and he had just saved my husband from virulent pneumonia. We were trusting his judgment regarding this cardiologist being the right one for my husband. He described the life of a cardiologist as a tough one. I remember him telling us about the saying, "Mothers, don't let your sons become cardiologists."

We asked him why an angiogram was necessary, since the echocardiogram had already proven that surgery was the only answer. He assured us that the angiogram was the "gold standard", and would justify the surgery. It would also reveal any problems with the arteries of my husband's heart.

It revealed something more, documented in the report. Something we were never told about. That is why I tell everyone to get copies of all their reports, and read them yourself.

I will tell you about that later, when I tell you about his aneurysm.

Now, my husband just needed to stay alive and get stronger following the pneumonia, if he could. Then he would have surgery.

This was almost 25 years ago. Perhaps not so very much has changed for someone still quite young and in trouble, like my husband, because they were born with a bicuspid aortic valve.

No comments:

Post a Comment

Arlys Velebir

Chairman & President of BAF

Disclaimer

Arlys Velebir is the President and Chairman of the Bicuspid Aortic Foundation. The statements and opinions presented here are entirely her own personal thoughts, and do not in any way represent the position of the Bicuspid Aortic Foundation, its Board of Directors, Scientific Advisory Board, or volunteers.